In and out, in and out, in and out. I am constantly drifting in and out. Sometimes I wander about in a state of fog. Pardon my language and bluntness but BRAIN TUMORS REALLY SUCK!!!!!!
Don't mind me, I am just in one of my "states" on this emotional rollercoaster ride known as "NF2". It is the deepest emotional pain I have known thus far. Perhaps I am really awakening now to the reality that I have several "brain moles" taking up residence in my head. I guess it never really came out over the last 4-5 years unless I experienced high stress to the breaking point. Otherwise, I have done a pretty good job of pretending they are not there and I was just losing hearing.
The first year was sort of emotionally hard but I put on my "invincable shield" and kept myself occupied with various activities seeing as the moles had not become a major problem yet. Ahh, how young and foolish I was thinking that because I kicked cancer, nothing could touch me! I held out for many years thinking "Gosh I must be one of the lucky ones".
Well it is here now and it is having its last laugh on me. The emotional pain is so intense! Sometimes I feel so alone in my somberness and grief. I don't want to bring the people down around me and I don't want to seem ungrateful and like I am complaining to those who have it worse.
I will end here as I need to try to get some sleep. Everyday is a period of ups and downs. There are days where I feel it is emotionally tearing my soul apart (as I once described to a fellow NF2er.....like someone has put meat hooks into my chest and pulling hard enough to rip my heart out!) Thank God though that I am blessed with my husband and dogs who try to cheer me if they see me in one of my states. I feel very lucky in many ways but at the same time I am overcome with grief, fear, and a multitude of other discomforting emotions. This is more difficult than I had imagined. I would jump for joy if I could only just be deaf.
5 comments:
Babygirl, you are VERY loved! And we feel for you massively. Wish that those were happening to me instead of you.
I love you and know that "angel wings" are wrapped around right now.
Angel
Heya Becks!
You're farther down that road than me, but I know how you're feeling. I've had to get Xanax for when it gets overwhelming. (I'm afraid of getting addicted to it, so only take them when I can't take it anymore- luckily, not very often.)
I want you to know that you're an inspiration to me, and I consider you a great friend. Although we're on opposite coasts, anything I can do for you, I will. We folks with "critters" in our heads have to stick together. ;)
Laura thank you for your kind words. Things have not turned out how I originally planned but I have thought about it and without NF2 I would not have met friends like you. I am truly blessed! It is a weird thing I wonder about often....."What would my life have been like without NF2?" Who would have I not met? What would I have not done that may be important but I just don't know it?"
I am glad Destiny had fun. I wanted her to feel included.
Thanks for coming by the house while we were gone and for your birthday greetings! :o)
Angel your words always place a healing hand in my heart!
I am very glad that you do NOT have NF2. You are on a different path and God has granted you the gifts you have because you are a very good listener and you are very good with people.
Thanks for keeping up with me and being my "angel". :o)
Hey Steven,
Before one of the "moles" grew rather large, I just tried to live with what I had at the time. It is interesting. I remember when Michael J Fox was diagnosed with Parkinsons Disease. He actually took it rather well and in an interview he said "I'm not in a wheelchair yet so I am going to continue to live my life." He of course knew what possibilities existed down the road but he was not going to spend his good and healthy years wasting it by fretting.
I remember when I was first diagnosed, I had some careless neurologist tell me that I could never scuba dive, ride my motorcycle, and many other things anymore. I cried all the way home (especially at the thought of not diving again). Then I saw a neurosurgeon with some NF2 experience. He told me that there was a good chance that I would go deaf but it was hard to say when. However, he told me to dive and do things to my heart's content. He said go out and enjoy what you love doing while you can. It was like he wrote me a ticket to get the most out of life whereas the other guy totally wrote me off and was always glum when I saw him.
That being said, yeah there can be some nasty things that can happen to you. Yet we don't know if and when they will happen. Some people get lucky. Go out and do what you want and can do now and catalogue the rest for later so that you have thought of alternatives.
You and Sally should come out to visit sometime! The real estate is hot here! (hint hint) :o)
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